Summer 2022 (Volume 32, Number 2)
Patient Perspective:
Kelsey Chomistek
Download PDF
At age 15, I started feeling
sore and began limping each
morning. As a competitive
dancer who trained seven days a
week, I initially dismissed the pain
and fatigue. I thought I was twisting
my ankles, and that my busy
schedule was making me tired. My
dance instructors said my technique
was declining and that I was
growing disinterested — despite
arriving early before each class
to practice. They also put me on a
high-protein diet to gain weight.
At Alberta Children's Hospital, I
learned why I was struggling: I was
diagnosed with rheumatoid factor
positive polyarticular juvenile idiopathic
arthritis.
It was incredibly challenging to
be given this diagnosis as a teenager.
I spent the first day of every school year getting an
infusion in the medical day unit. I was often too exhausted
to attend social events, I was always late for school, and
the side effects of my medications made me sick on the
weekends. I continued to compete, managing my arthritis
symptoms by taping my ankles, using ice and heat packs,
taking breaks in class, reducing my dance schedule, and
starting medications (prednisone, naproxen, methotrexate,
and etanercept).
One year after my diagnosis, my dance studio notified
me by email that I could no longer be a member of the studio
if I was unable to meet their requirements. As a dancer
since age four, I was devastated. I felt like I had lost a piece
of my identity and felt suddenly isolated from my peers. I
was able to graduate high school with distinction despite
a significant number of absences due to medical appointments,
and I started my undergraduate degree in health
sciences. My degree became my next challenge, as I tried to
navigate a rigorous program and an uncontrolled disease.
During my second year, I had a synovectomy of my right
wrist due to persistent inflammation and pain. I vividly remember
the professor who stated that I would have to take
a 0 on my midterm because my surgery was scheduled for
the same day as my exam. I recall crying in the library as I
tried to write notes to study for my final exams two weeks
post-operatively. I did poorly on my exams that year, and
my grades continued to decline, as I struggled to complete
the following semester with a wrist that was taking longer
than anticipated to heal. I was told I could either transfer
out of my program or risk being
kicked out of university due to being
placed on academic probation.
This was the second experience
where I felt like my arthritis had
taken something from me — my lifelong
dream of becoming a physician.
I reluctantly transferred programs,
and during the summer of my third
year, I had a synovectomy of my left
ankle less than 24 hours after writing
my Medical College Admission
Test (MCAT).
Following my undergraduate degree,
I started a Master of Science
in Medical Sciences, working with
Dr. Heinrike Schmeling and
Dr. Cheryl Barnabe, supervisory
committee, and team at the Alberta
Children’s Hospital to develop a
self-management program for adolescents
with juvenile arthritis. This project was important
to me because I wanted to make the transition to living
with a chronic illness easier for patients and families. I
wanted patients to have the skills required to manage their
disease and to learn to advocate for themselves to minimize
the challenges that I had faced. As I continued my degree,
I slowly lost my ability to walk, as I wore down the cartilage
in my left ankle and eventually needed a knee scooter to
mobilize due to the pain. Losing my ability to walk remains
one of the hardest experiences that I have had to face since
my diagnosis. As a previously healthy and active individual,
I simply never imagined that I would need to decide
between an ankle replacement or ankle fusion and have
to live with the consequences of my decision. I opted for a
total left ankle replacement, and at age 23, I learned how to
walk again for the second time. I used the time recovering
from my surgery to submit my medical school applications.
In 2020, I received a different kind of email. I was accepted
into medical school at the University of Calgary.
Now at age 27, I have spent 13 years living with inflamed
joints, pain, stiffness, limited range of motion, and fatigue.
My subtype has been treatment-resistant and has resulted
in erosive changes and irreversible joint damage. My
disease has remained poorly controlled during my medical
training, and it continues to be challenging as I pursue
my career and learn how to navigate balancing my health,
countless appointments, career, and personal responsibilities.
The hardest part of living with a chronic illness is that
it is an invisible disease. It is difficult for people to truly understand the symptoms I am experiencing when I look
like an otherwise healthy young adult. It is also difficult to
reconcile the feeling that who I am as an individual isn’t
being accurately portrayed due to my physical limitations
and fatigue. I became involved in the arthritis community
because I wanted to raise awareness, to show others what
it really means to live with a chronic illness, and to share
my experience with families to make this diagnosis easier
to manage. I am co-founder of the Teen Arthritis & Autoinflammatory
Group (TAG), and in partnership with
Cassie and Friends Society, we have expanded TAG across
Canada to provide peer support for adolescents diagnosed
with pediatric rheumatic diseases.
I am currently in my last year of medical school and one
of my teenaged patients had also lost their ability to walk.
On the last day of my rotation, they were able to bend their
knees without pain for the first time. For the first time
since my diagnosis, I cried because arthritis had given me
back something even more meaningful in life — the opportunity
to truly understand what my patients are going
through and help them realize that they are not alone.
Kelsey Chomistek, MSc
Medical Student
Cumming School of Medicine
University of Calgary
Director at large, Cassie and Friends
Calgary, Alberta
|
